Weber Family Life

The last post.....

2011-07-13T05:25:00.000-07:00

This blog is FULL! I guess I write more than I thought! So this is the last post here, but I have already started another blog, please continue to follow our story there, and continue to pray for our family. Thanks!!!
The new blog address: www.weberfamilylife2.blogspot.com

Happy Birthday my Sweet Doodle Bug

2011-07-13T05:22:00.000-07:00

I can't believe my little miracle man is 5 today! I look back on all that we have experienced, all the sickness and fear, all the questions, and am reminded that God has walked with us through all of it. I am thanking God today for this amazing little boy, and for the priviledge I have had in being his mom. I have learned to be a better person, a better friend, and most importantly my faith has increased. Thank you God for this little boy, and thank you Sammy for being who you are. I LOVE YOU to infinity and beyond.........

Joint Hypermobility

2011-07-07T05:22:00.000-07:00

I took Sophia to a rheumatologist on tuesday of this week. Because she has been having the joint pain for almost a year, and the orthopedic doctor does not believe it is structual we got referred to the rheumatologist. She was absolutely wonderful. She does not believe that Sophia has arthritis which is such an answer to prayer. There are a few things that are concerning to her though: the fact that she is stiff and the pain is worse in the morning, the fact that she had that undiagnosed eye pain in the same time frame as when the joint pain started (I guess this is very typical presentation of rheum. arthritis in someone her age). But her physical exam looks good in terms of saying that it is not arthritis. She did however say that she has some hypermobility of her joints. And therefore we will be going to physical therapy to see if we can strengthen her core muscles and help stabilize her joints better. We also will be going back to the pedi opthamologist to have a special test that is specific to rheum. arthritis too.
So we will just continue to pray that this heals and she feels better. Swimming this summer has seemed to help so hopefully between swimming and the PT we can strengthen her so much that we can resolve the pain.

Happy 4th of July weekend!

2011-07-02T18:19:00.000-07:00

Happy Birthday America! It is certainly a blessing and a priviledge to live here. I am so thankful to have amazing doctors and health care, a wonderful job that helps to support our family. Freedom to worship my God and King. Freedom to wear what I want, go where I want, and do what I want. I am thankful that God has blessed me so abundantly and that I can proudly say that I am American. I am thankful that my children can go to school and playgrounds and play without fear. That we have enough food to eat, and clothing to wear, and a beautiful home to live in. I pray that in the coming year more Americans will remember that God is the founder of this country and that He has blessed us so abundantly.
A special thank you to all those military men and women out there fighting to keep America, America! God bless you and thank you from the bottom of my heart!!!

My brothers and sisters

2011-06-25T02:04:00.000-07:00

Being from a big family is such a blessing to me. I am the oldest of six children, and have loved always having someone around. As each of us has gotten older we have had our differences of opinion, but at the end of the day we all love each other so much. As of right now, five out of the six of us are all living here in Massachusetts, but sadly by this fall that will all change. My brother DJ and his wife Lyndsea will continue to live in florida, my sister Deanna is moving to Texas, and my brother Dennis and his wife Johanna are moving to North Carolina. It will be hard to not have either of my brothers around, my kids love their uncles so much as do I. Each of my brothers has married and will probably be starting families of their own within a few years. My sister Denise is married to Ron, and they have three kids and one angle baby in heaven. My sister Doreen has a beautiful little boy named Darius, who has been on here before. All this to say I am just incredibly thankful for my siblings. God truly has blessed me tremendously with them.

This is the 6 of us in 2008 (shortly before I had Sophia), when Dennis was on a break from a tour of duty in Iraq

This is our family in 2009, at the graduation party that we had for my twin sister's Deanna and Doreen

And this is the 6 of us on thursday morning, prior to my doctors appointment and DJ's return flight to Florida.
As I have been going through my pictures I have realized we don't take enough pictures of the six of us together:-(

Rain rain go away

2011-06-23T18:51:00.001-07:00

I feel like we have been cooped up forever! The kids are so cute, they keep syaing that it is going to rain for "40 days and 40 nights", I am so glad that they are remember their Bible stories and applying them to real life. I am obviously praying that we don't have rain for that long. A day or two here or there is not too big of a deal but a week on end, it is getting a little old.
We are doing well. I am so so thankful that Sam's burns are healing nicely. The blisters are still closed and I am of course praying that they stay that way. We will have to be extra careful if they do break open, as his infection risk is higher than normal. But so far so good, and he is doing really well with being careful of them.
I will be 25 weeks pregnant tomorrow! This little munchkin is growing and I feel like I am huge! I love it though! I am praying that the baby continues to grow really well and that I can make it to term this time. I love being pregnant and the miracle that God allows me to partake in, but my physical body doesn't like it at all.
We have a busy couple of days with four parties to go to this weekend. I will try to post some pics of this week tomorrow before the craziness of the weekend. Hoping and praying that you have a blessed day

Coordinate Care Clinic and Boo-boos

2011-06-22T07:24:00.000-07:00

Sam had his follow up with the coordinated care clinic at MassGeneral yesterday. It was a good appointment. He is 42inches and 40lbs! He is finally growing well. As nervous as I was about the surgery in January, God really guided the decision and Sam is now thriving. We discussed school concerns and possible port placement. Also the relative long term implications of his medical care. We have a couple follow up next month and hopefully we will then have a pretty good idea of what we are looking at for at least the next year or two.
After that we went to visit my inlaws who are camping. The kids got to swim and play with their cousins. They made ooey gooey s'mores and had a blast. Then poor Sam touched a propane lantern and got second degree burns on his hand. He didn't cry at all, and I didn't realize how bad it was (it was dark) and so I just got a cool pack out of the cooler and put that on it. He didn't cry at all the poor little guy. Please say some prayers for him, that they will heal quickly and there will be no complications.

MassGeneral tomorrow

2011-06-20T16:41:00.001-07:00

Sam's has an appointment with the Coordinated Care clinic at MassGeneral tomorrow. I am praying that they can shed some light on this chest pain issue. I did finally hear back from GI and he is recommending restarting an old med that he was on, and giving that a week to see if that helps. But I just don't feel like this is reflux. I feel like it is something new. I don't think reflux would affect so much of who is like this has...Praying for answers and for healing....

Our Garden...

2011-06-18T19:26:00.000-07:00

IS GROWING FANTASTICALLY!!!!!

Chest Pain???

2011-06-14T13:04:00.000-07:00

Well Sam officially has a new complaint. I am not quite sure what the problem is yet though. Last monday after his IVIG he started complaining that he had chest pain. I kind of was thinking that he bumped his chest (although there was no mark) or that it was some type of reaction to the IVIG. I kind of didn't worry too much about it on monday night when we got home, and then tuesday and wednesday he didn't complain about it. So then I kind of just stopped thinking about it. I saw his PCP over the weekend at the hospital on my way into work, and COMPLETELY forgot ot ask about it:-( She was off yesterday and because he is so not typical in his complaints, the other doctors in her office really don't know what to tell me. He complained again about it yesterday, and asked me to rub his chest. So now I am really stumped and praying that it is really nothign to be concerned about...talking to the doctor again tomorrow....
In other news our garden is growing!!! The kids and I are so excited. They run outside every day and want to see what is bigger from the day before. We can't wait to be able to actually pick veggies and fruit from it.
I am doing ok. My liver studies from last week have gotten a little more elevated:-( This pregnancy I am really realizing how God truly is in control regardless of what the medical professionals say.
Last week wednesday after preschool a bunch of us mom's went to Dunn's Pond. There were 9 moms, and 18+ kids! It was a lot of fun. The kids had so much fun. My two absolutely love the water. I foresee a lot of swimming this summer, as long as I am not on bedrest.

Blogger issues???

2011-06-14T03:08:00.000-07:00

Anyone else out there having problems with blogger? I can't comment anywhere and have been emailed by people saying that they weren't able to post a comment on my blog. Does anyone know what is going on with that?
We have had a crazy few days. After Sam's graduation on friday, I started my four nights in a row at the hospital. I am completely 100% exhausted and can't wait to sleep today. I am so so blessed by such wonderful friends that come and take the kiddos so I can sleep! They actually had a sleep over last night at a friend's house, and they are staying there throughout this morning so I can sleep after work.
I am feeling pretty crummy the last few days but I am not sure if it is related to working so much with so little sleep, or if there is something going on pregnancy wise. I did have my liver tests drawn last week in Boston and they are up a little more than they had been the week before:-( Not sure if it is a significant enough increase to be concerned or not. Praying that it isn't.
PRAYER REQUEST: A co-worker of mine has a daughter named Ashley who was pregnant. Ashley delivered her precious baby girl the other day, at 27wks, the baby is 2lb 4.7oz and has been doing well. Ashley was very sick with pre-eclampsia and HELLP syndrome (like I have been previously) can you please lift up this family in your prayers? Thank you so much!!!

SUYL: Special Needs Kids

2011-06-10T18:45:00.000-07:00

Over on Kellys Korner Blog, they are doing a link up of kids/adults with special needs. Kelly does a wonderful job linking people together who are sharing similar situations.
My story with Sam starts with an extremely complicated pregnancy that ended with him being delivered early. After our NICU stay (I am a nurse) I just knew that there was something wrong with him. His first year of life was spent in and out of the hospital with many infections and difficulties clearing them up. At 9months they said he had the immune deficiency, at 13months we started IVIG. At that time he started to do really well. When he was 2 we started having lots of GI issues, and bloody stools. He was diagnosed with irritable bowel syndrome (although this diagnosis) I am not sure is accurate. Shortly after that he was diagnosed with a bleeding disorder called platelet agreggation dysfunction. Essentially his platelets don't work well, he is a high risk for hemorrhage. He randomly bleeds, but we are praising God that he hasn't had a big bleed in quite a while.
He is a happy beautiful loving little boy. I am so thankful for him. For the journey we are on, it is making us all better people. I am anxious as we look forward to him going to school in the fall, and all the uncertainties medically. But we are happily moving forward:-) If you are curious about any of his medical issues, I have TAGS on the sidebar of my blog such as IVIG, hematology, immunology etc.
If you have hopped over from Kelly's welcome, glad you are here. I would love to hear from you:-)

Friendly Farm

2011-06-02T01:32:00.000-07:00

Sam had his last field trip of the school year yesterday. We went to this great little farm that had lots of farm animals to touch and hold. He had so much fun. It was an exceedingly hot day, and I (apparently in my nurse mode) was so nervous that the kids were going to get dehydrated and overheated but thankfully they all did ok.
I am feeling a little better each day. I have made lots of progress in the last few days getting into the right place since this pregnancy is so high risk. And the bonus is I get to have another ultrasound next week:-)

Memorial Day and a Baby Update

2011-05-30T18:22:00.000-07:00

Well I got discharged from the hospital, with instructions to do as little as possible, until I felt better. I certainly feel better today than I did on friday but about the same that I felt on saturday and sunday. Maybe not quite so tired. I guess that that is a good sign. Since I don't feel worse, then it probably isn't progressing HELLP syndrome.
My brother and his wife took the kids to the Memorial Day parade today and the kids had a blast. I am so thankful that they still got to go even though I couldn't take them. We just essentially spent the whole afternoon and evening at my parents today. I sat in a lounge chair in the shade and watched the kiddos playing. It was a perfect day with lots of good food, family and friends. I am so thankful that we live in an age where people love and support our military and the sacrifices that they make for us!!!

PRAYERS please

2011-05-28T07:57:00.001-07:00

Goodness, this is going to be a quick info filled update. Currently I am sitting in the hospital on bedrest. I called the hospital yesterday stating that I was having diarrhea and vomting and that I had a bad headache. They had me come in and did labs mostly just to appease me. But the labs came back bad, and then I had a big discussion with the doctor about how the baby isn't viable yet, and if I am already getting PRe-eclampsia or HELLP, the only resolution is to terminate this pregnancy. We have notified our prayer warriors and people have been praying. I ask that you do too. This mornign my liver tests were better than last night, but still not normal. And my platelet counts had dropped by about 30 points, but are still within the normal range. So at this point they are thinking that it probably isn't HELLP syndrome, but we will continue to watch the labs. Please be praying for this little miracle baby, and for our whole family. For wisdom for the doctors and for us. And for this baby to defy all the odds, and at the end of this, for not one person to deny how amazing God is:-)

Garden

2011-05-23T07:13:00.000-07:00

It feels like we haven't seen the sun in a month, but all this rain certainly is helping the garden to grow. We have pole beans, sugar snap peas, tomatoes, zucchini and summer squash plants already growing. And someone from Matt's work gave us a Russian tomato plant, I guess he brought over seeds from Russia and they are now growing the plants. I am excited to see what the difference between their tomatoes and ours are. When there is a break in the rain I will take some pictures:-)
We are all doing well. Sammy has his kindergarden screening this week. It is so hard for me to believe that my baby is growing up and will be in kindergarden in the fall. Sophia is such a talker, we have these amazing conversations with her. We are awaiting a referral to go seea rheumatologist to see if they can figure out the cause of her pain, we are also seeing the head of orthopedics at Boston Children's next week. So please be praying about that.
I am feeling ok. I did have the UTI last week which was absolutely terrible. I can't believe I am 20 weeks along with Baby Surprise. As we get further along I am starting to get nervous but am praying that this pregnancy is the one that has no ambulance trips, no complications, no NICUs, no crisis' situations, no Magnesium, no pre-term labor and need for steroids, no pre-eclampsia or HELLP syndrome. I would be just beyond thrilled to go full term this time, be able to stay home until the end and go into labor like a normal person:-) I have actually started another blog as well. The new one is www.weberfamilylife2.blogspot.com
I was thinking that I would share this new blog once I announced I was pregnant but I haven't shared it until today. At some point I will probably transition over to the other one. Come follow my new one please:-) Leave a comment and let me know you came

Gardening

2011-05-13T16:49:00.000-07:00

WE have planted our garden in the last week. The kids were so excited about it, talking about it for days and days. When we finally got to the actually planting part they were interested for about five minutes TOTAL!!! Sam planted a few watermelon seeds and Sophia planted nothing. She just kept rearranging seed packets. We planted: Sweet corn, broccoli, zucchini, summer squash, pole beans, peas, cherry tomatos, beef steak tomatos, watermelon and one more thing that I can't remember:-)

Digging Up Worms

2011-05-03T18:18:00.000-07:00

We are so excited to be planting a garden this year. I CANNOT wait to have fresh veggies right from the garden. So delicious. I have been reading another blog (www.4tunate.net) and they had been talking about planting a "Square Foot" garden. So that is what we are attempting to do. It essentially is a way of planting that makes the most efficient use of your space. So needless to say Daddy and the kids have been working out there a lot the last few days. They got a kick out of all the worms they were finding in the dirt:-)

Spring adventures

2011-05-01T17:58:00.000-07:00

The kids and I have been out almost every day this past week on a bike ride. The kids have been riding their bikes and I have been walking beside them. THey are having so much fun. We are so blessed to live in an area where there are many bike paths and areas to get out and enjoy the enviroment. Soph has intermittently been complaining more often about her legs hurting. I am noticing it more and more. We get outside and she starts complaining shortly after she is very active. Poor kid, I am not exactly sure what to do at this point, since the orthopedic doctor wants to wait until the fall to determine if this is a real problem or not.

Easter eggs

2011-05-01T17:52:00.000-07:00

The kids had a blast at Meme's decorating eggs and then having an easter egg hunt. My favorite part of Easter this year, was realizing that my kids KNOW what easter is all about. That without a doubt that they know that Jesus died and rose from the dead, to forgive us and make a way for us to spend eternity with Him. What an awesome priviledge it is to watch God's children learn about His love for us:-)

Rejoicing!!!
I Corinthians 15:4 He was buried, and he was raised from the dead on the third day, just as the Scriptures said.

Easter pics (FINALLY)

2011-05-01T17:44:00.000-07:00

Goodness it seems as though lately I just can't keep up with this blog. Now that the warm weather is here we have been running what feels like all day every day. WE are so loving the sunshine and warm weather, I am starting to come out of the constant nausea stage with this pregnancy, so we are chomping at the bit to get out and enjoy the beautiful creation that God has given to us.
Easter this year was fun. My mom decided that it would be fun to have everyone dressed in purple. And so all of us (sadly minus DJ and Lyndsea though) wore purple. We actually got some family pics too:-)

New Bikes

2011-04-19T22:33:00.000-07:00

The kiddos got new big kid

bikes and are so excited about them. Of course since we have gotten them it has mostly been rainy, but we are hoping for some more sunshine this week:-)
They both thought that attempting to ride up the steps was a good idea. I am okay with this, as long as they don't attempt to ride DOWN THE STAIRS:-)

Sophia ortho update and the DENTIST

2011-04-18T22:21:00.000-07:00

Goodness just realized that I had forgotten to write about Sophia's appointment with the orthopedic doctor. Essentially it was an extremely frustrating appointment. He said that her hips turn in too much (which he said should resolve by age eight) and that the lower part of her legs turn out too much (again this SHOULD resolve by ag

e 4). He was not at all concerned about these issues. The only thing that he was concerned about was that she has been complaining of pain, and he said that that wasn't normal for a three year old. I had mentioned how she cries in the morning and has a lot of difficulty with the stairs and cries that her legs hurt, he said that this was behavioral, which REALLY REALLY bothered me!!! I have a 3 year old who has been a climber since before she could walk, who has never had an issue with stairs, who can skip and hop. Who is super active all the time, and then over the course of this winter has developed pain, difficulty with stairs, increased stumbling and it is BEHAVIORAL??? Really?!?!? Anyways a little annoyed. He essentially said that if she continues to complain then we should call him back and they will do an MRI and bone scan. But he thinks that a lot of it is behavorial in one sentence, and in the next he is really concerned about her pain....So we shall see...
In other news she had her first official trip to the dentist last week as well. She was very excited at first but then got anxious for a couple seconds until the girl actually started counting and checking her teeth, then she would randomly laugh while she was sitting there.:-)

I stink at this....

2011-04-17T08:00:00.000-07:00

Officially pregnancy and I are not getting along. I have been feelingn like I was probably dehydrated for a couple of weeks, but nothing absolutely terrible and the OB's didn't seem at all concerned about it. Well after our marathon day in Boston on friday, I was feeling pretty terrible that night. I couldn'tkeep anything down. I contacted my doctor and she said she would meet me in the morning to give me IV fluids. They had a HORRIBLE time getting the IV in, it took them 9 attempts!!! They were going to send me up to the hospital but I begged them to just do it there. So thankfully they finally got the IV in. I needed 3 liters of fluid before I could even pee.
By their scale in the office I have lost 24 pounds in the last two months! By my scale at home I have lost 18lb. I just can't tolerate much in the way of food when I am pregnant. It makes me so mad. I get these crazy cravings for something that I know is going to taste absolutely fabulous. And then it comes right back up:-( YUCK!!! I am feeling like this time hasn't been as bas as with Sam and Sophia. I was doing IV fluids like every few days for weeks with them. Thankfully I am fifteen weeks now and this is hopefully coming to the end. With both Sam and Soph this severe nausea and vomiting stopped between 17 and 18 weeks. SO hopefully I am almost there.
I look like a bruised pin cushion! But thankfully I feel a little better and have some more energy today. I unfortunately didn't go to church as I am still feeling kind of crummy. But am hopeful that I can really recup some energy today.

Crazy friday

2011-04-14T18:55:00.001-07:00

Tomorrow is certainly going to be an extra busy day. We need to be at the hospital for Sam's IVIG for 07:30. My friend Chris is taking Soph first thing in the morning so that she doesn't have to see them putting Sam's IV in. After his IVIG another friend will take Sam for me as Sophia and I have to go see an orthopedic doctor at Children's. IT certainly is going to be busy. I am anxious to hear what the doctors have to say about Sophia and to see what if anything they can do to help her. Please pray for a good complication free day.

"You hurt my feelings!!!"

2011-04-13T19:13:00.000-07:00

So today Sophia was being very naughty. I turned around to her and said "Sophia Grace Weber you need to be quiet and stop your whining. There will be only indoor quiet voices in my van or you will have a time out when we get home."
She immediately starting crying. And continued to cry for a few minutes. She then said "Mommy you hurt my feelings so bad! God doesn't like it when you hurt peoples feelings." Ugghhh, I am so torn with this one, on the one hand she was naughty and does need to be reprimanded, however I also agree that God doesn't like us to be mean and hurt people. I am so thankful that my speaking to my children about our loving God is sticking with them. They have memorized a few bible verses which is so awesome to me. Their favorite right now is "Never stop praying" I Thessalonians 5:17

GI update

2011-04-07T18:12:00.000-07:00

So our GI appointment went relatively well. He was pretty happy with Sam's weight although also concerned with the continued belly pain. He is now up to 38lbs!!! We increased his periactin dose, for two weeks, and at the end of the two weeks if he isn't better then I am to call his immunologist to see if we can stop the singulair. Apparently singulair has been linked to some belly pain in the past. And then after two weeks off the singulair then we will then move on to a new GI med to see if that helps resolve this crazy stomach pain.
I can't believe he will be five soon! I have been filling out all the paperwork to get him into kindergarden in the fall! My baby is growing up:-) He is such a joy and such an inspiration to me. With all his medical problems/challenges, with all the scares that we have had with him since pregnancy, I feel so blessed to be his mom. God has given us such a tremendous blessing in Sam (and Sophia as well). I feel like because we have had so much struggle with him that I have appreciated and enjoyed each and every moment with him moreso than if he was healthy. It is a reminder that we are never promised tomorrow, but more so than that is that our God is an awesome amazing all powerful God, and that His plan for us is greater than we can even imagine.
I am just in the place of thankfulness, thankful for the challenges we have had because htey have made me a better mom, and a better person. I have become more compassionate and understanding. I wouldn't have the sam compassion if I didn't have this chronically ill kiddo to love. Just thankful:-)

A new week

2011-04-04T01:50:00.000-07:00

It is the middle of the night and I am at work wishing I was home in my nice warm bed:-( I am so incredibly tired. This pregnancy has seemed to really be exhausting for me. But such is life. I am thankful that God has chosen to bless us with number 3:-) Sam and I will be going into Boston today for a GI follow up. I think this appointment will go well as Sam has been doing well since we started that new med last month. He still has had some funky stools but he may just be a kiddo that does that. Oh well:-)
Have a wonderful day:-)

Sophia has an announcement to make!

2011-03-31T17:29:00.000-07:00

She wants to tell everyone that she is going to be a big sister!:-)
WE ARE EXPECTING!!!! WE found out in January, things are going fairly well so far. We were starting to talk about getting pregnant again, but probably waiting until the summer or fall. We certainly didn't expect it to happen as fast as it did. We are thrilled, the kids are happy although I am not sure that they completely understand what is going on

We have been to high risk OB as well as the regular OB. High risk OB basically said, yeah I definitely have the risks for HELLP and pre-eclampsia again. But she said is that my only risk factor is that I have done it before. SO unfortunately there is nothing that I can do to decrease my chances of getting it again, but we are praying hard that it doesn't happen again. I certainly am praying for full term and healthy with no complications, and while I am at it, for a VBAC will you join me?
I am feeling ok although definitely tired, and quite often weak as I am vomiting a lot. The OB that I am seeing now doesn't typically do anything for the nausea so at this point I am just trying to deal with it.
We finally started telling people this week as we are 13 weeks tomorrow! Our due date is October 7th:-)

Would anyone like some water?

2011-03-27T00:06:00.000-07:00

I don't often talk about them, but we have two cats that live at our house. Their names are Lewis and Clark. They are great. They put up with a lot at our house, and the kids love them. I always thought that cats didn't like water, that is until I met Lewis. He LOVES to be in the bathroom when the kids take a bath. He leans right over the side, and tries to drink the water, the kids splash him, and Sophia has even dumped water on his head and he still stays:-) Silly!!!

Well child check up

2011-03-23T23:56:00.000-07:00

Sophia had her 3 year well child check up today! I still can't believe my little peanut is growing up. She is 28.7lbs and is 36inches tall, she is just about in the fiftieth percentile!!! Not bad for my little failure to thrive baby:-) She is above and beyond for her age as far as language skills, recognizing shapes/colors etc.
We did have some concerning issues though. I have noticed for a very long time that Sophia has a very strange gait when she is walking, and especially running. I have mentioned it in the past to the doctor, but it has never been thought to be any big deal. I again mentioned it to her while we were there and she had her running up and down the hall of the office. She then saw what has been so concerning to us, and seems to be concerned herself.
We origionally were going to be seen by the head of pediatric orthopedics at Children's on June 3rd but the doctor was adament that she be seen sooner and therefore we will be going to see his colleague April 15th. I am anxious about this appointment but praying that all will go well. I just don't want her to have the frequent stumbling, and more recently she has been complaining that her legs hurt. She is incredibly fast and I don't want whatever this is to hinder her. Please say some prayers for my little princess

Butterflies

2011-03-19T23:44:00.000-07:00

We celebrated our little Sophia's third birthday today. It is still so hard to believe that my babies are growing up so fast. We have officially exited the baby stage right now. We had a wonderful day with a butterfly themed birthday party. She was thrilled with so many people coming to celebrate her, and she was tremendously blessed by some wonderful presents.
We had such a great day:-)

The blessing of Sophia Grace

2011-03-18T05:23:00.000-07:00

Three years ago today my beautiful precious baby girl was born. It was the most amazing experience of my life. With Sam he didn't cry and had complications at birth, so when Sophia came out screaming it was absolutely incredible. I get so emotional thinking about it even now. Being nearly five weeks early I didn't know how she would be but she was amazing:-) Becoming a mother to a little girl is such a tremendous blessing

In her first year of life, she was this tiny petite little girl who was content to watch and smile at everything around her. She didn't ever really want to crawl, and most of the time scooted on her butt. She didn't have much hair, and therefore I got to put beautiful handmade bows and headbands on her from Auntie Tracy

We celebrated her first birthday at Cushing Academy. So many friends came to love on our precious baby girl. Unfortunately on her actual birthday she was sick and had a temperature of 104! Poor little princess!

Around the time she started walking we started to really notice how adventurous she is. She is absolutely fearless, and loves to try new things. She is fast, and so curious. Almost as soon as she started walking she was running. And there has been no looking back. She LOVES to run! People have said that she should be put in track. Her second birthday was a cupcake theme, although she didn't really eat any. Her two year pictures were so much fun to get. We were in the middle of a rain storm but you would never know...

Today Sophia and Mommy are going out for a birthday breakfast after we bring Sammy to school.:-) Sammy has IVIG today so she gets to go spend some time with Miss Meg, and then tomorrow we are having a butterfly birthday party for her. Wait until you see the AMAZING dress my friend made for her!!!
Happy birthday sweet Princess! I love you to the moon and back

3 years ago today....

2011-03-16T19:02:00.000-07:00

I was 35weeks and 2 days pregnant and admitted to the hospital for complications of pre-eclampsia and HELLP Syndrome. I was scared, overwhelmed and very sad that I again was getting so sick. With Sam by the time I realized I was getting sick I was really too sick to understand how bad off I was. But with Sophia I carried that fear throughout the pregnancy that I would again become so deathly ill. I am praising God that I didn't! That I delivered a beautiful healthy baby girl. Do I wish that I could have made it full term? Absolutely! Do I wish that I could have been one of those people who went into labor on my own, when I was full term and have a picture perfect delivery? Definitely! But that was not God's plan for me, and my birth story with Sophia brings such joy and amazement! I am so thankful that this precious baby girl was sent to us. Reminiscing about my precious beauty:-)

My last pregnancy pic, with Sammy the big brother (only 20months old!) kissing my belly

Poor neglected blog.........

2011-03-15T17:36:00.000-07:00

Goodness, can't believe how long it has been since I have updated. Our internet was down for over a week so that is part of my excuse:-)
What's happened with us this past week or so:
-Results of Sam sleep study: NORMAL!!!! Praising God for this wonderful news
-Sam had some pretty significant GI bleeding last friday into saturday, but
again praising God that it has resolved. His GI doctor is believing that
he has probably a collection of blood vessels close to the surface of his
colon and that they are prone to bleeding. That being said, if his
platelet dysfunction (bleeding disorder) is not bad at the time of the
bleed, then it will resolve on it's own. If he isn't clotting properly
then something will have to be done.
-Our basement flooded last week:-( Thankfully although our washer/dryer and
boiler were all in the water, they weren't damage
-I started back to work!!! As a real nurse! It was so fun to actually take
care of patients again. My back did bother me some but it was totally
tolerable
-I had my re-eval for PT, they said that I still have significant decreased
mobility between the vertebrae in my lumbar reason, muscle weakness on
the left, and continued muscle spasms. So they are recommending to
continue PT twice a week still.
-I went to a webinar last week regarding Pre-eclampsia diagnosis and
treatment. I have always known how sick I was when I had Sam, but
actually seeing the data in front of me was truly terrifying. EAch
of the people that was at the webinar had some experience with me when
I was pregnant with Sam, and each shared how scary it was....Thankfully
MY GOD is bigger than Pre-E and HELLP and He kept us both safe:-)
That is what has been going on here in the last week or so. Sophia turns three this week! I still can't believe my little baby is going to be three. She is doing great with the Potty training TODAY:-) yesterday was a different story. We actually had a Potty Dance Party two weeks ago which was really fun:-)

Oh please PRAY, and then PRAY Some more!!!

2011-03-04T21:43:00.000-08:00

Click on this link and read this story about Precious Lucy who was just recently diagnosed with cancer, with several tumors, and who has now been diagnosed with meningitis too. The sweet little angel, perfectly healthy one minute, and then the next diagnosed with a life changing horrific disease. I am praying and believing for miracles. Wont' you please join me???

Sleep study

2011-03-03T07:41:00.000-08:00

We had the sleep study last night and all went well. I won't hear any results for two weeks, although if there is something bad we will hear sooner. But Iknow that God has resolved the sleep apnea, and I am not worried about it.
I have been diagnosed with Planta fasciitis, and can I just say it is SO SO painful. I am praying that it heals quickly.
Sophia had a wonderful sleepover with her friend last night and today we are having lots of wild and crazy kiddos over to play. And then tonight I will go to work, I am just praying between my back and my foot that it will be good night.

Paint

2011-03-02T14:05:00.000-08:00

Do your little people love to paint? My kids love it. I love the crayola paints, they enjoy them so much!
Sam and I are off to Children's for him to have his repeat sleep study tonight. Praying for great results

Psalm 46:10
He says, “Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth.”

The craziness of this week....

2011-03-01T19:37:00.000-08:00

Lets see:
Over the weekend Matt's rear windshield shattered
Sammy started coming down with some respiratory illness which has gotten
worse, I am wondering if he is developing a sinus infection
Matt got some flu like illness with fever, aches chills etc. He has been
sick since sunday. And actually feels worse again today
Me: I got the approval to go back to patient care after 7months! And no
now believe I have plantar fasciitis!!! Not positive, but spoke
the doctor tonight on the phone and that is what she thinks. I will
get checked in the AM.
Sophia: the little darling was praying for all three of us tonight. She
was so incredibly sweet, and asking God to heal each of us, but
then also thanking Him for healing us. I am so thankful that my
children already are developing a faith that KNOWS what our God
can do.:-)
So that is our week so far in a nutshell. It has been a rough week but God is still God and He is still providing for us. We are praying that everyone feels better in the morning. Sam is supposed to have a sleep study tomorrow night at Children's, I am still unsure of whether or not they are going to reschedule due to his sickness. My friend graciously has agreed to take Miss Sophia while I am in Boston with Sam, again God is taking care of us....
My favorite verse of all time:
I can do all things through Christ who strengthens me:-)

Sam is sick:-(

2011-02-27T05:19:00.000-08:00

His doctor made a comment about a week ago about how long it had been since he had had an upper respiratory infection (the beginning of january), and we were just so thrilled that he has been doing so well. He had his IVIG last week so even though he was starting to be sniffley I was praying that the IVIG would fight it off. But it would appear that it hasn't. We've got a very congested little guy on our hands. The mucous is thick and green but I am praying we can get by without antibiotics.
Looking forward to a sunday of praise:-)

Psalm 136:2 Give thanks to the God of gods. His love endures forever

Weekend is HERE!

2011-02-26T04:43:00.000-08:00

Goodness it feels like it was an incredibly long week. I am thankful for the weekend and to not have too many things we have to do. Kids are doing well although Sam is pretty fussy, and I always start wondering if he is coming down with something when he starts acting this way. He had IVIG this week so hopefully this is just crabby kid week.
WE had the yuckiest storm yesterday. It snowed all morning then switched over to rain then back to snow. It was a big slushy gross mess. I am so ready for the winter to be over and some warm sunshine and green grass....
Hope you have a fabulous weekend!

Cousins:-)

2011-02-24T17:29:00.000-08:00

We got to have Darius over for the night last night. Sam absolutely loves him. It is so awesome to see them together. Both Sam and Sophia have been saying things like "I have a new baby brother and sister." to which everyone is completely suprised/confused. But they have claimed Darius and Danay as their own siblings. It is awesome to see how compassionate and protective Sam is of babies. When Sophia was born he was only 20months old so he didn't really understand "the big brother role."

Magic Wings

2011-02-24T17:23:00.000-08:00

Last weekend Sophia and I went to "Magic Wings", a butterfly place in western massachusetts. It was amazing. There were hundreds and hundreds of butterflies, many different colors, some exotic birds. It was awesome. Sophia and I had a wonderful time, while Matt and Sam went to a Monster Truck show.

IVIG, sickness, and friends

2011-02-23T04:36:00.000-08:00

Few busy week as usual. IVIG went fabulously well on sunday evening! They got the IV in on the first try, and everything went so smoothly. He did awesome. And we had great nurses.
Monday Soph was sick again:-( Not sure what is going on with this crazy bug. We had had four days since she had vomited and then she started again. I did hear that that is how it happened with my mom too though. I also was vomiting on monday and a wonderful friend stopped with crackers and gingerale. The kids love gingerale.:-)
Yesterday we didn't do a whole lot. Hung out here, did some cleaning. Denise, Dasanee and Danay came over so the big kids all got to play. Matt's parents came over and watched the kiddos last night so we could go to a bible study. Sam was screaming like crazy when we were trying to leave, we had to peel him off me. It breaks my heart when he does that. It has happened maybe three times in his life so when it does it certainly gets my attention. He had a great time and was fine after we left.
Today we are going to a friend's house so the kids can play and then she is watching them when I go to physical therapy.
Again this week I am so blessed to be surrounded by such wonderful supportive people. They make themselves available and are so helpful and kind and compassionate. I am so incredibly blessed.

IVIG tonight

2011-02-20T12:16:00.000-08:00

We are going to attempt IVIG tonight at our local hospital. We have had such bad luck with IV's lately, so I am praying that it goes well. I scheduled it when one of our favorite nurses (and a HUGE talent with IV starts) is on. He is super excited to go see "Miss Chris."
We have had a very busy weekend. Matt and Sam went to see a Monster Truck show yesterday, which Sam raves about, and Sophia and I went to Magic Wings which is this amazing butterfly place with hundreds of butterflies. They fly around and land on you and everything. IT is awesome. Soph seemed fine yesterday AM when we were getting ready to leave, but seemed to feel intermittentely cruddy yesterday, and that has continued to carry over to today. Praying that my sweet girl feels better soon
I will get around to posting pics of our adventures soon....for now I've got bags to pack, supper to make for Soph and Daddy, and some snuggling with my babies. Have a blessed day!!!

2 Corinthians 7:16 I am glad I can have complete confidence in you.

I have a beautiful new niece!!!

2011-02-18T19:13:00.000-08:00

I have a new niece that was born today! I am so excited, however I am so so disappointed that I didn't get to see her be born. I unfortunately didn't get the texts/phone call until this morning at six! So sad that I missed it. But oh is she precious! Seeing how my babies are always early and on the scrawny side it was so wonderful to snuggle this baby. I couldn't get over how wonderful she felt in my arms.:-) If only I could grow a baby like that!!
My sister got to the hospital around 1 in the morning and delivered her at 3:24am. She was 8lb11oz and 20inches long!!! A TON of silky black hair

Sick and snuggly

2011-02-18T10:01:00.000-08:00

My babies are starting to feel a little better although still pretty wiped out. Sam started with diarrhea, but we are praying that it is resolved quickly. He and Matt are supposed to be going to see a Monster Truck show tomorrow, so I am praying that they are able to go.

Sick:-(

2011-02-18T05:53:00.000-08:00

Yesterday was quite a long day. Miss Sophia was pukey and had high fevers that weren't coming down with medication. Sam also developed a fever but thankfully hasn't vomited. He seems to be feeling better today so I am praying that it is over for him. I vomited this morning but it was only once and I have eaten since so I am hoping it was just a little touch of it and now it is better. Sophia is still sick today although she has drank well this morning and hasn't vomited so prayerfully there will be no more vomiting at our house:-)

Fevers and puking

2011-02-17T10:55:00.001-08:00

The stomach bug has invaded our house. Please say a prayer for us that it leaves as quickly as it came!

Another great day:-)

2011-02-16T16:23:00.000-08:00

Sam is having a wonderful week! I am so thankful to be here and on the other side of all of the surgery, complications and then the belly stuff. God has as usual (AS ALWAYS) brought us through and I am just so so thankful to be here. Sammy is eating fairly well, isn't complaining of pain and is acting perfectly healthy. Awww, smiling!!!!
We are doing so awesome this week. I am just in such a deep appreciation for God's provision for us. Sometimes I get so bogged down in the trials that I forget to be thankful for the blessings. And this week I am remembering:-) Sophia is such a darling and is so smart and animated, she is spunky and determined, loving and loves "snuggly time." What a wonderful feeling to snuggle your baby as they fall asleep, and then to just stare into their faces as they sleep so peacefully.
Matt and I again got to attend a bible study last night and it is great to have some adult time and also be studying and getting closer to God.

Psalm 107:1 OH give thanks to the Lord, for His steadfast love endures forever

2011-02-15T08:40:00.001-08:00

Had my eval for PT yesterday. I was hurting just from the evaluation. But I already feel like this time is going to be the time that makes progress and makes things better. THey said that I have some immobility in between several of the vertebrae, and that that is leading to the muscle spasms. So the plan is to start working those verterbrae in order to stimulate the synovial fluid production to lubricate them. So prayerfully that will work.
Kids are doing well. Sammy is feeling well this week. He really enjoyed his Valentine's Day party and is looking forward to several playdates we have planned this week:-) Miss Sophia continues to be so stubborn about going pee on the potty. I am praying that she will just one day start doing it and never look back. We shall see.....

A good weekend

2011-02-13T17:40:00.000-08:00

We have had a good weekend. The kids and I had a fun playdate yesterday AM then we had Matt's cousin Joel and his girlfriend Kristen over for the evening. It was a great time. The kids ran Joel and especially Kristen ragged though.
Sam seems to be doing better stomach wise. He has complained intermittently throughout the weekend but nothing consistent and nothing that was too much discomfort for him. Praying that this week brings him even more relief. He has a Valentine's Day party at school tomorrow. He is so excited about it. And mean momma that I am we had a lot of good letter writing this weekend as I made him write all 20 of the kids in his class's names on their invitation:-) He did awesome:-)
Tomorrow I start my "intensive back rehabilitation." I am very curious as to what effect it will have. It was seemingly useless when I did PT before, but I sure would love to have this discomfort out of my life once and for all. We shall see.....

I can do all things through Christ who strengthens me Philipians 4:13

ENT and GI

2011-02-10T13:23:00.000-08:00

ENT appointment went really well! The doctor was pleased with how his throat looks and the tubes look great in his ears. They did do a hearing test, and his hearing is FINE!!!! Praise God! So that just means I have a kiddo who I need to retrain to like things quiet:-) He did say that he definitely wants to repeat the sleep study so we will see when that happens. The other interesting thing about this appointment was when we were talking about his tonsils. After the surgery he had stated that one of Sam's tonsils was green and he hadn't ever seen anything like that before. I questioned him about that today to get more information. He said that the particular bacteria that was growing on his tonsil is not one that is typically grown on humans, but because of his immune dysfunction that is why he grew that strange bacteria, but now that it is removed it won't be an issue.
He also really cried that his stomach hurt today after lunch:-( He actually didn't even stand up straight when we got out of the van and was walking hunched over. So I have another call into the GI doctor to see what they think we should do. It sure feels as though you get one situation resolved and then start on another:-(

Psalm 5:1 Give ear to my words, O LORD, consider my meditation.

Off to the doctors

2011-02-10T04:25:00.001-08:00

We are off to see Sam's surgeon today. This is just a follow up to the surgeon, but I find myself a little anxious as I feel like his hearing has been affected by the surgery and therefore will be asking for a hearing test today. Praying that they can do one.
Tonight the kids are going with their grandparents for a little while and Matt and I are going out! I am so excited as it feels like we NEVER do anything together anymore. It is so hard to continue to strengthen our relationship when we are so pulled in so many different directions and don't often get to be just the two of us. I am definitely looking forward to tonight. And it is exciting because it is a surprise and I love surprises:-)

Gardian:-)

2011-02-09T16:27:00.000-08:00

Got the most wonderful package today. The company that makes Sam's IVIG product, gives their families all kinds of wonderful stuff. Special books and stuffed animals for the kids, an IVIG journal to bring to each of his treatments for HIM to document how it is going and how he felt after, and he is really excited about that. And then a couple of different medical binders to keep track of all his health stuff. With stickers and dividers, pockets to keep all the doctors cards, calendars to mark each day and what is going on, and then an actual book type project for Sammy to write his story in. So so excited about this. They have a whole on line community for support, and questions. I am just so thankful that we have the opportunity for all of this. IT stinks to have all these medical issues, but what a blessing it is to have such an amazing support team to help us:-)
Sam has complained only twice today of his belly hurting. He ate ok for lunch and didn't complain during lunch. HE did complain at supper, and actually vomited tonight, stating that it felt like something was "clogging his mouth" and that he couldn't swallow. That feeling has since past but I have no clue what this is all about....
We had a great playdate today. God has blessed me so tremendously with some amazing inspiring women, and I am just thrilled to pieces when we get together. Today was one of those days. The kids and I had a wonderful time and I left feeling refreshed and encouraged.

Psalm 35:28 My tongue will proclaim your righteousness,
your praises all day long.

It's back:-(

2011-02-09T04:37:00.000-08:00

Sam has not complained of belly pain in four days but unfortunately yesterday he started complaining his belly was hurting again.:=( The first time he complained was not when he was eating, and then he complained a couple more times before supper and then a little while we were eating. Ugghhh so frustrating! I am hoping it was a fluke thing, this morning he is gaggy so I am not sure what is going on. He doesn't want to eat anything either but he did eat well last night.
They got to play outside a little yesterday with daddy which is always nice. They LOVE it, and hten I get to make supper without whiny kids, which I LOVE:-) My in-laws have agreed to watch the kiddos for us each tuesday for the next several weeks so Matt and I can go to a small group bible study. Last night was our first night and I was really happy we got to go. I am hoping and praying that we both can grow in our relationship with God and each other through this time. A special thank you to my Grandma and Grandpa for taking care of the rugrats for us.
Please pray for my sister Denise today. She is 34 wks pregnant with a little girl. Her pregnancy has been rather complicated and then yesterday they did an ultrasound that showed that the baby's heart wall is too thick, and that her kidneys and liver are enlarged. We don't know what any of this means yet, but we are just praying for God to heal this little one.

Chuckie Cheese:-)

2011-02-07T17:44:00.000-08:00

Sammy had another great day today! I am just so thankful that his stomach is finally feeling better. It is so strange how prevacid wasn't strong enough for him last fall, and we moved on to stronger medications, then this bad belly pain came back and the prevacid works really well:-) Thank you My Great Physician for taking care of Sam.
We also got a surprise invite to Chuckie Cheese today. It was totally last minute but a good friend invited us to join them and so we went. The kids had a wonderful time. They love Tristan, and we were happy to be celebrating his third birthday with him.

Deuteronomy 4:35
You were shown these things so that you might know that the LORD is God; besides him there is no other

Feeling so blessed:-)

2011-02-06T18:23:00.000-08:00

Sammy had another wonderful day! He hasn't complained of belly pain since friday!!! Thank you Lord for your answered prayers! I am just so relieved and enjoying having my sweet little guy eat with us and not be in pain. He is so sweet and loving and I am so thankful to be his momma.
Sophia seems to be coming down with a cold. She just wants to snuggle, and this momma loves to snuggle her. I can't believe that in just over a month she will turn three!!! Where does the time go? She is such a joy, she is so spunky and fun loving, she is determined and wants to lend a helping hand always.
We had a wonderful church service today. We actually skyped with a missionary in Indonesia. It was really cool to hear firsthand what God is doing out on the mission field. We so often take for granted how easy we have it in the US, but to hear from someone that has taken the call and gone where God has led him it was eye opening.
We have had a good weekend. Matt went to the church yesterday to help shovel off the roof. We have SO SO SO MUCH snow around here! I can't wait for it to melt so we can see over it:-) The kiddos LOVE painting and so we had a messy painting adventure too:-)

I John 4:7 Beloved, let us love one another: for love is of God; and every one that loveth is born of God, and knoweth God.

Better?!?

2011-02-05T17:12:00.000-08:00

Sam didn't complain of belly pain ALL DAY today!!! I am so thankful! Praising God for His goodness. He has eaten well today and been active and running around like a typical kid. My smile couldn't be bigger:-)
We had a relatively low key day. Miss Sophia got up super early this morning so we got going early for our errands. We were supposed to be getting a rain/ice storm today (I thought it was early in the day so I wanted to get out and back home early) but it actually didn't start until this evening. I am praying that we can still go to church tomorrow.
Matt went to the church today and helped shovel off the roof! I would have been terrified to be up there, but thankfully there were 8 people brave enough to get up there and shovel it off. But then you know what my husband did?!?!?!?!? HE JUMPED OFF THE ROOF!!!! I guess it isn't that big of a deal since he sank in snow up to his armpits, but still!!!
Praising God for His amazing goodness and love today:-)

Love each other with genuine affection, and take delight in honoring each other. ~ Romans 12:10

Prevacid

2011-02-04T13:24:00.000-08:00

We restarted the prevacid with Sammy yesterday. I am not sure how long it will take to work, but I am praying that it will be fast. He seems to be less irritable today, and hasn't complained of pain when he isn't eating, I guess we will see when we eat supper.
I went to work today for a few hours. It still is such a hard pill to swallow that I have been unable to work for so long, and still here I am not doing "my job" or "real" nurses work. But I am truly thankful that I am able to do something and that the hospital is accomidating my limitations. I got word today that the specialist I saw a couple weeks ago (who I thought was a complete wasn't of time) has recommended that I restart physical therapy, and that it is very agressive to retrain/strengthen those muscles around my back where the torn discs/bulging discs are. So they are sending me to a PT place that I guess back injuries are their whole focus. Praying that this gets everything back in place for me. That I can get back to baseline and get back to a normal life.

Psalm 90:17
May the favor of the Lord our God rest upon us; establish the work of our hands for us--yes, establish the work of our hands.

Playates and Belly pain

2011-02-03T12:54:00.000-08:00

We were able to go over to our friends house this Am. The kids were so happy to see Tristan. And it was nice to get out of the house, even though I am completely exhausted. Shannon and her husband are moving this week, in this wonderful New England weather, so the kids and I stayed at the new house with Tristan while Shannon made several trips from the old house to the new. When we get the three of them together, someone usually ends up naughty. Today the especially naughty one was Sophia. She dumped KITTY LITTER (thankfully it was completley clean and unused) all over the carpet, inside Tristans toy and also in his play kitchend!!! Ooooh I was so upset with her.
The kids had a great time. They were eating lunch and shortly after Sam started complaining of a lot more belly pain. I just feel so bad for him and wish that there was something that I could do to take away the pain. Poor little guy! But through it all he is just the sweetest boy ever. We came home from our playdate and had a quiet afternoon at home. Sophia colored with me, and Sam and I talked about him going to kindergarten:-) While we were sitting down eating dinner, Sam had another bought of belly pain. I just feel so bad for him. WE did restart the prevacid and stop the prilosec today. I wish that I could just take this pain from him forever. Watching your children suffer is so heartbreaking, but it is also an unbelievable reminder of God's love for us, can you imagine knowing what would happen to your only Son if you were God? Can you imagine the heartbreak of watching him be put to death? I can't! I just cannot even imagine. And as I struggle to help Sammy, I am reminded of how amazing God's love for me is, that he sent his Son to suffer for ME and YOU!!!

See the disaster they made?

Proverbs 22:11
He who loves a pure heart and whose speech is gracious will have the king for his friend.

Up to 24!!!

2011-02-02T05:34:00.000-08:00

Uggh I am so tired of this ridiculous amount of snow! This storm alone could dump another 24inches on us. Not to mention another one coming this weekend! The snow is deep enough that the kids can't really walk in it. Matt snowblowed most of the yard into a big hill for the kids to slep on, and then he iced it down so they could go really fast. It is really

. He put a ladder in the side of it. Sophia was going down just on her belly. Sam was going down on the sled. Thanks Daddy! We will have to try to unbeary it today.
I spoke with Sam's GI doctor for a while yesterday. We are both fairly baffled with why he is having all this belly pain again:-( It all stems back to all those bloody noses a couple of weeks ago. But that blood should no longer be irritating his belly. We are going to start another reflux med, and we are praying that this will do the trick for him. Just have to wait for the health insurance to improve it, and the roads to be drivable:-)

Job 37:6:
For he saith to the snow, Be thou on the earth; likewise to the small rain, and to the great rain of his strength.

Immunology and Pulmonology

2011-01-31T18:14:00.000-08:00

Sam had two appointments today. One at Children's and one at MassGeneral. Both went fairly well. We saw immuno first. I think he may have been thinking about attempting a trial off the IVIG this spring, before he read the chart and recent trips to the hospital and heard about the sinus infections, URI's, etc etc. That would have been awesome to see if we could be done with this part of our lives. When he discussed it before he said he would only do it in the spring, as he didn't want him to go into the winter completely unprotected if his immune system wasn't going to kick in. So I guess that means another year of IVIG:-(
We then went to pulmonogy. THis appointment went well. The doctor was pleased with the fact that his sleeping has improved, and that he seems to have more energy and spunk. He said he wasn't "overly concerned" about his breathing, just slightly. I am hoping that we can not have to repeat the sleep study, but we shall see. We go back in three months and at that point they will decide if it is necessary. Or if I think he needs it sooner then I just need to call.
Oh guess what? They said he weighs 36.4lbs!!! He has gained his weight back! And he is 41 and 1/4 inches!!! Growing:-)

Winter Fun

2011-01-29T18:20:00.000-08:00

Today Matt, the kids and I all went over to my parents for the afternoon. We had a great time. There is so much snow right now that the kids can't even really walk around in the snow. So at my parents house in the backyard my dad snowblowed a large part of the yard into a huge pile. Matt then built steps into the pile and made a trach for the kids to sled down. Sophia went once by herself and then didn't want to go again, except she went with Matt. Sam went several times and had a wonderful time.

We also got to spend some snuggle time with sweet Darius! He is smiling and cooing now. It is so amazing to see my little baby holding a real baby. It feels like so long ago when Sophia was tiny, and then to see her holding Darius, :-) Makes me wonder how she would be as a big sister

Preschool, playgym, miracles and Chest pain:-(

2011-01-28T14:09:00.000-08:00

Sammy had a great day at Preschool today. I was able to speak with his teacher for a few moments after class to see how he is doing since he was gone for FIVE WEEKS!!! She said he is doing well. At the beginning of the year she had mentioned how sometimes children (especially boys) who have late summer birthdays are not quite ready for kindergarten when they turn five. I kind of have had that in my head this whole year. I was talking about it with her a little today, he doesn't do very well with his paperwork (letters, drawing, etc) but other than that he is doing very well. So if there is anyone out there that has chosen to keep their child in preschool an extra year, or send them to kindergarten what helped your decision?
We also got to go to a local "playgym" today. The playgym has one of those inflatable jump houses, slides, balls, monkey bars etc. We got to meet several of our friends there. The kids had a wonderful time. And then I got to meet this precious little miracle:-) I was praying for this baby before she was even conceived. I had taken care of her older brother in the hospital, and spent a lot of time talking with his mom. We have become friends, and she now attends the MOPS group that I go to. I was so excited to hear that this precious little love was on her way, and meeting her today was such a reminder of God's amazing love and miraculous ways.

Sam and Sophia had a blast running around with their friends. Sophia seems quite talented when it comes to soccer and she really enjoyed it.

We had a wonderful time and then came home for lunch and quiet time. Sophia took a little nap, and hten when she woke up Sam fell asleep. When Matt came home from work, we were talking and Matt commented about Sam's color changing, and then he started coughing. He woke up. And after he woke up he started complaining that his chest is hurting. Not sure what this is about, but praying it is nothing.

I Samuel 1:27
I prayed for this child, and the LORD has granted me what I asked of him.

Thankful Thursday

2011-01-27T11:55:00.000-08:00

Today I am thankful:
-for my beautiful children
-for Sam's recovery and no further bleeding since sunday
-for my husband
-for my job
-for my family
-for my friends kindness, generosity, love and encouragement
-for doctors/nurses that care about Sam and take wonderful care of him
AND MOST IMPORTANTLY...
-for a God who loves and forgives me inspite of all my flaws.
What are you thankful for?:-)

Rainbows

2011-01-26T19:01:00.000-08:00

Sammy has been going to Rainbows (kind of similar to Boy Scouts, but the Christian version) since last year. He has really enjoyed it. They do all kinds of crafts, activities, stories, etc. He has made lots of friends, and has been looking forward to the awards ceremony, which was tonight. Only he WOUNLDN'T GO UP ON THE STAGE!!! He didn't want to have anything to do with going up there unless I went with him! Oh well! He has earned five badges this year so far. He has absolutely wonderful teachers, and I feel so blessed to have him apart of this wonderful ministry.

IVIG

2011-01-25T17:07:00.000-08:00

Sam had his IVIG today and as it seems to be the trend lately they had a tough time getting the IV in:-( He cried as soon as they pulled the IV cart in, between the ER on friday and the surgery he is COMPLETELY DONE with the medical issues right now. Poor guy! We see the immunologist next week, I will be curious to see what his thoughts/plans are as we move forward with the IVIG, if/when their will be a trial off it again, dosage changes etc etc.
We haven't had any more bleeding since the mild bloody nose last night, so I am so thankful. We stopped the amicar last night, so I will be praying that we have no recurrence of bleeding now that he is off.
We had a wonderful playdate today with lots of friends. It wasn't planned to be this way but we ended up with 9 kiddos here today:-) My house is going to take a while to recuperate but I am glad that Sammy is feeling up to running around and playing and making a mess with his friends.
Preschool tomorrow, then another playdate, and then MORE SNOW!!! I am done with winter I have decided. The negative temps, and wind chill are bad enough, and then the snow is so deep the kids can't even play in it. Oh well! Spring is coming right???

After 3 weeks!!!!

2011-01-24T17:47:00.000-08:00

After 3 weeks my handsome little guy FINALLY made it back to preschool today. The teacher seemed kind of nervous, as was I. But I know that God will protect him and that if I keep him out until all things are well and healthy he might never get there. He is feeling fabulous, he hasn't had any bloody noses the entire weekend, and like I said GOD WILL PROTECT HIM!! So I have a very happy little guy on my hands tonight, he had a lot of fun playing with his friends today. Tomorrow we are having another playdate with friends we haven't seen in a while, then we are heading into Childrens for his IVIG. And then wednesday another playdate. I am so thankful that God has placed so many wonderful people in my life, and in the lives of these kiddos:-)
In other news I did another shift at the hospital last night. It is hard to believe it has been six months since I hurt my back. And even harder to think that I may never get back to the baseline that I was at before. It is hard doing (in my opinion) NON-NURSING nurse work. I mean what I am doing is still important, but it isn't at all what I have in mind when I think of a nurse. And so I am struggling with "this new normal" and praying that soon I will get back to the place in which I can work in a setting at which I feel fulfilled and where I feel God calling me to go.
I also had a doctors appointment for myself today. I went to a specialist and got some information regarding my medical health as well as future medical decisions. I am surprised (in a good way)/ and disappointed in the results shared with me today. I know God knows and His plan is perfect so now we will just be praying for God's will in this situation

Sweet Dreams my angels:-)

2011-01-22T18:59:00.000-08:00

They just love each other, and I just love them:-)

Psalms 37:7
"REST IN THE LORD AND WAIT PATIENTLY FOR HIM"

Children's Hospital ER

2011-01-21T19:56:00.000-08:00

So I have always tried to avoid the ER at all costs, after today if the suggestion is to go to the ER at Children's I will go in a heartbeat. I won't argue or balk about it.
AFter calling our primary's office the suggestion was to call the hematologist. Sam's hematologist was off so I spoke with the on-call doc. She was very nice, and suggested started the Amicar again, and also calling the ENT, and having them schedule an appt as soon as possible.
So I called the ENT's office, and they wanted us to go to the ER ASAP as they thought there had been too many bloody noses, too many days, and too close to the surgery date to eliminate the risk of him bleeding from his adenoids. So we travelled into Children's. We never even sat in the waiting room, they took us in immediately. They were thorough and kind. They were absolutely wonderful.
So they actually put a camera up Sam's nose and into his throat, and got a really good look at the surgical site. They determined that the incision sites were all healing very well. There was some blood at the adenoids but they believe it is just trickling down his throat from his nose. They placed a medication saturated gauze up his nose, that was supposed to help him clot. They then packed his nose and let us leave, although we have to follow up with hematology in the morning.

Bleeding continues

2011-01-21T07:21:00.000-08:00

Well we have just made it through our third night of the lovely bloody nose game:-( Good thing there is red sheets on the bed:-) We are so thankful that the bleeding is not related to the surgery. However even with moisture, vaseline etc the nose bleeds are continuing to occur. PCP did blood work on day one of this to make sure he had a good amount of platelets. His platelet count was fine, but seeing how it has never been the number of platelets he has, but is actually how they are functioning I am not sure if this is useful information. He was not anemic the other day, so that is also an answer to prayers. Waiting for a call back from hematologist to see what the next course of action should be.

Bleeding

2011-01-19T05:40:00.000-08:00

Ugggh! Thought we were past the bleeding risk, and prayerfully we are. However Sam has had two bloody noses in the wee hours of this morning. After two weeks (we are two weeks and two days) bleeding is much less common. I called the ORL and they said that I could bring him in to their ER or to our pediatrician. I am waiting for the office to call to bring him in. Essentially we are going to be looking for a clot in the back of his throat. And if there is I don't know what the plan will be...except that we will be going back to Boston. I know God is in control, but right now I am very nervous. Please pray for Sammy today

I Kings 8:28
Yet give attention to your servant's prayer and his plea for mercy, O LORD my God. Hear the cry and the prayer that your servant is praying in your presence this day.

Faith like a child

2011-01-18T17:18:00.000-08:00

I am so often reminded by my children how amazing our God is and how we need to learn to trust Him always. Today the weather was TERRIBLE, we had a snow storm, and although there wasn't much accumulation, there was also some sleet and icing going on. Anyways I was supposed to have a doctors appointment today for Workman's comp. I called the office to see if I could reschedule due to the weather. The office staff very rudely informed me that if I didn't come that I was a "No call no show" and that my workman's comp could be terminated! She said that I had to call my workman's comp insurance adjuster directly adn that she would have to reschedule the appointment. Of course she had taken the day off. Long story short, after a lot of frustration and phone calls and run around I was able to reschedule the appointment for thursday.
Meanwhile my son who has a wonderful inspiring faith, says to me "Mommy can we go to my friends' house? I know it's dangerous but God will get us there safe!" It is so wonderful to see his little heart blossoming with love for our Saviour, and faith that God is our protector:-)

Matthew 17:20 (New Living Translation)
"You don't have enough faith," Jesus told them. "I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible."

Two weeks and counting!

2011-01-17T18:28:00.000-08:00

It has been a rough two weeks, but I am so thankful to say that God has brought us through with flying colors. Sammy is doing well. He is drinking very well now, and I thankfully have no concerns with his hydration status. Food is still a bit of an issue, but he has STOPPED losing weight! He is back to 34lbs and hopefully I can fatten him up. He is playing and not quite as irritable.
And although he definitely had some apnea last week, last night he DIDN'T!!! They have said that it could take a full four to six weeks to know whether the apnea will be completely eliminated. But for now it is looking positive. They said we would need to repeat the sleep study probably so that I am sure is something we will be scheduling soon. We have pulmonology and immunolgy in the next two weeks. And then GI and hematology in february. ALWAYS something!
I had my follow up for my back today. I had gotten so anxious just prior to Sam's surgery that they were going to give my job away, or say that I had to come back full time the day of his surgery. But as always God prevailed, and everything was put on hold. Today I went and they are going to continue to the partial shifts, as well as the no lifting for another month. I am still awaiting an appointment with the back specialist but I am not sure when that will be
When Sam had his surgery my wonderful friend Meg came with me. I truly don't believe that I could have made it through that day without her. I was a mess, and she was truly God's hand extended to comfort me. She was so thoughtful and brought along her I-pod with some beautiful inspirational songs on it. I was so deeply touched by one of the songs, but sadly could not find it to share with you on YouTube. If you google "How would I know by Kathy Troccoli" it will take you to her site and you can listen. And I highly recommend that you do. THis song has spoken so much to me, the lyrics are below....
"If it wasn't for the times that I was down
if it wasn't for the times that I was bound
for all the times that I wondered how I would ever make it through
all the times that I couldn't see my way and I had to turn to You

How would I know you could deliver
How would I know you could set free
if there had never been a battle
How would I know the victory
How would I know you could be faithful
to meet all of my needs
Lord I appreciate the hard times otherwise how would I know

I remember all the times I had to cry
and at the time all I could do was wonder why
Why would a God so kind and loving
allow me to go through all this pain
if I could see into the future
then I would know the joy I'd gain

How would I know you could deliver
How would I know you could set free
if there had never been a battle
How would I know the victory
How would I know you could be faithful
to meet all of my needs
Lord I appreciate the hard times otherwise how would I know

How would I know that you could make a way out of no way
How would I know if I never had a need
Brother I know what your goin through
Sister I know cause I've been in your shoes
But I can truly say that I know what God can do

How would I know you could deliver
How would I know you could set free
if there had never been a battle
How would I know the victory
How would I know you could be faithful
to meet all of my needs

Lord I appreciate the hard times otherwise how would I know

HOME!!!

2011-01-15T19:15:00.001-08:00

Home again home again jiggity jig!!!

We are HOME
I am THANKFUL
We are BLESSED
We are SNUGGLING
Our family is TOGETHER

Write more tomorrow

Day 11

2011-01-14T19:01:00.000-08:00

Playtime with Uncle Bud! He is looking pretty pale today:-(

We thankfully made it safe and sound to my aunt and uncles last night. The driving was a little nerve racking but God protected us and here we are. Sammy had an ok day today, it seems as though he rallies in order to be able to play, but then turns around and is pretty wiped out and crabby. Eating is continuing to be a huge challenge.
His night last night was pretty awful. I did end up calling the doctors office this morning. The nurse was really concerned and recommended that I take him into the ER to get him evaluated. She then proceeded to warn me how long of a visit it woudl be. She said that she thought he was dehydrated. Then my nurse brain kicked in, I knew that he wasn't dehydrated enough to warrent IV fluids, and therefore we would sit in the ER for who knows how long, exposing him to who knows what! I told the nurse that I really just wanted someone in the office to see him, but she said it sounded more as though the ER should. I decided against the ER with the thought that if things got worse I would bring him in. Thankfully they didn't get worse!
I got a whole glass of milk into him this morning and he had some soup as well. Keeping him nourished and hydrated is a huge challenge. I am so thankful that I have been staying with people who love him too and who are just as invested in getting him better. This is certainly a full time job!
He is just loving playing with Uncle Bud:-)

Recovery Day 10

2011-01-13T14:53:00.000-08:00

I can't believe it has been ten days!!! I am so thankful to have ten days behind us towards him being better. Unfortunately we are in another high risk of bleeding phase of the recovery. From day 10-12 is another high risk of bleeding, and with his bleeding disorder we are even more at risk. I know that God will continue to see us through this recovery and that in Him all will be ok.
He slept pretty well last night, he only woke up once. Today his appetite is TERRIBLE! He has lost so much weight I am very concerned. I wish I could lose weight like him (instead of him). He is now complaining when he sits at a kitchen chair that it hurts his back, I am sure it is because there is nothing covering his ribs/spine except the stretched skin:-( Please pray that we can get him eating again so he can put on some weight and feel better. When this whole thing started he was 38 and a half pounds and he is down to 32!!! Six pounds is a lot when you were already very thin.
We ended up getting 26inches of snow!!! It is crazy out there, I will be leaving later today to go to my aunt and uncles, just a town over. I am a little nervous to venture out in this weather though....

Chugging along towards HEALTHINESS

2011-01-12T18:44:00.000-08:00

We are chugging along with this recovery. It continues to fluctuate, between I think he is starting to do better to I think he is worse. I didn't call the doctors office today so I guess that is a little better right? I think he was up twice last night. His throat is still pretty unbelievable. I still can't get over the mess that it is in there. Even my mother, who is also a nurse was pretty shocked. Poor little pumpkin. We are supposed to get a big snow storm tonight. Up to 20inches or so. Praying that tonight won't be the night that we need to go to the hospital, or any night for that matter!
The pictures are from the last few days that I didn't have a chance to post...

These are from sunday when Daddy and Sophia came to visit. It was so nice to spend time together as a family. It felt like it had been so long.

The recovery process....STINKS!!!!

2011-01-11T16:52:00.000-08:00

Sunday was a good day for Sam. Matt and Sophia came to visit which was awesome. It was so nice to actually be a family again. It wasn't too long before the kids were arguing and we were having to referee them. It felt so comfortable:-) I miss being a family and having us all together. Don't get me wrong I am loving spending the one on one time with Sam, and having the time to spend in the evening with my best friend, but I am a wife and mom and I miss being JUST that right now:-)
Monday my parents came to visit which was really nice too. They commented about how thin Sam is, and I guess I hadn't really noticed. I have been complaining recently at the last few doctors appointments that he had been losing weight but I had been reassured that he was ok. But after my parents left I put him on the scale, he has lost almost five and a half pounds! I know that doesn't seem like a lot but he was really thin to begin with, we can see all his ribs, when he sits on my lap he feels frail and boney.:-( Unfortunately this weight loss is probably going to continue for another week or so. He is now down to 32lb and is four years old!!!
Monday evening and night Sam got a little irritable before bed, he woke up twice last night in terrible pain. There was nothing I could do for him to help. I was praying, rocking him, singing, but he was just hurting too bad to notice. I called the doctors office, and they said that increased pain at this stage is completely normal. I am not sure if I agree but I am going to wait another day and see. The poor kid is so irritable. It just seems to me that if plain tylenol was able to manage his pain all last week when we had the surgery, why after a week is it not able to cut it anymore? Ugggghhhhh!!!!!!!!!!
Please pray for my boy tonight. That he is comfortable and pain free, that he can sleep well and feel better tomorrow. And also (the nurses informed me that day 10-14 are the biggest bleeding risks after the first 24hrs) that there will continue to be no bleeding. Thanks!!!

Post-op Day 6

2011-01-08T17:02:00.000-08:00

Coolest puzzle ever! Auntie Tracy and Uncle Tim and their kids got Sam this awesome dinosaur puzzle for Christmas. We have done it several times each day.

This is Chantal and Andrew's dog "Rake". He is so sweet! It is fun having a dog

Sammy has been playing "Go Diego Go" on my computor

Sammy and Auntie Chantal built a card castle

Sam had a terrible night last night. I was convinced that I had made the wrong decision in not bringing him to the ER. This morning he seemed to have much more difficulty swallowing then he had had previously. Chantal and I made the mistake of looking in his throat. NOT PRETTY!!! We both were completely grossed out. I don't ever recommend looking in someone's throat that has had this surgery! It looks like pus is coating his entire throat and uvula, with scattered bits of green infectious looking material. IT is DISGUSTING!!!! So I of course called the on-call doctor again, and he kind of chuckled. Stating that they tell parents not to look in the throat because it looks so awful, but that what I was describing was completely normal.
His spirits/activity level got better throughout the day. But eating has been almost non-existent. I have been physically forcing him to drink, but I am sure he hasn't had quite enough fluids today. Adn then tonight he finally ASKED and WANTED to eat something. He wanted ice cream:-) And kept wanting more and more. So guess how much he ate? SIX SCOOPS!!!!:-) That will get him so calories.
Thanks for your continued prayers. I would also like for you to pray for my sister's baby Darius, who is now one month old. They are not exactly sure what is going on with him. But he is currently at Children's Hospital in Boston. They are doing lots of testing trying to figure out why he is anemic, has a distended abdomen, is intermittently jaundiced, and has had intermittent vomiting and now is having trouble stooling. Please keep him, his mother Doreen, and all the doctors caring for him in your prayers.

Post-op Day 5

2011-01-07T12:49:00.000-08:00

What a week it has been! I am so thankful that God has brought us through this week and so blessed that we are no longer in the hospital. I wish that we could be home as a family and oh how I miss Miss Sophia snuggle time. But we have had a good week. God has protected all of us. It has been tough, but prayers have been answered repeatedly.
Today I am worried as Sam is acting worse today than yesterday. He is eating fair, and drinking not enough. He may be getting sick or something I am not quite sure. Please continue to pray for him as he continues to recover.
I got to see Sophia today. It was so wonderful to see her, but it was terrible when she left. I just feel so sad for her and for myself. The poor girl gets carted off often because of what is going on with Sam, and although we have wonderful family and friends caring for her, it is not the same as mommy and daddy. Please say prayers for her as well.
I got off the phone with my mother a little while ago, and she has said that she is taking my nephew Darius up the hospital. He is a month old now. But last night he started vomiting and today he is continuing to vomit and is lethargic. So please pray for him as well as his mom Doreen. Thank you!!!
God bless!! I will try to post some pics tonight:-)

Released!!!

2011-01-07T07:15:00.000-08:00

****UPDATED POST*** with pics
Paula and Sophia came around lunch time. I couldn't stop myself from smothering her with kisses. It was so wonderful to see her. I feel so guilty not taking care of her right now. It was so good to have her here and to cuddle and kiss her. To feed her and take care of her. It was terrible when she left:-(
While they were here Sammy started to get tired, I didn't think too much of it, but as the afternoon wore on I started to get more concerned. I eventually calleed the on-call surgeon (who thankfully was aware of Sam already) and told him what was going on. He said we could bring him to the ER but that there wasn't much he could tell me over the phone. So now we will just go through tonight and see how he does....
Sophia inhaling a pancake:-)

Sammy having some snuggling time with Auntie Paula

They let Sam leave Children's late yesterday! I am so thankful. Of course we do have to stay close by for another week, but just being outside of the hospital is so wonderful. He seems to be ok. We are at my best friends house and he drank about 7ounces of milk last night! It was great. He is also sipping on apple juice and tolerated all of his medicine since we have been here.
I can't get him to eat anything this mornign but at least he is drinking well. He slept fairly well. He woke up twice crying a little due to pain. But quickly fell back to sleep and slept until after nine!!!
I am missing Sophia so much! It is so hard to be away from my baby. I know she has been well cared for but there is nothing like snuggling and kissing her myself. My friend Paula is bringing her to see us today and I can't wait.:-)
I have more pictures to post and will do that a bit later. AGain thank you for all your prayers! Please continue them as he is still at an increased risk of bleeding throughout the next 10 days or so.

Surgery Day 4

2011-01-06T11:58:00.000-08:00

Auntie Chantal came to visit and spoil us (AGAIN)

Sam did much better last night! Praise God!!! He vomited his evening dose of medications, but he tolerated a small amount of food, and few ounces of liquid. He slept really well.
I have been playing a game with him today, trying to get him to drink a lot of fluid. THey want him to have the equivalent of what it would take to keep a two to four year old hydrated, even though they think it should be more. They feel as though if he gets the required 24ounces in a 24 hour period that he will be safe to get out of here. So I have been lining up medicine cups (they each hold one ounce) and playing a racing game to see who can drink the fastest. It takes him like five minutes or more to swallow the whole ounce but he is working on it, and we are making progress.
There is discussion of discharge this afternoon or evening if I can get enough fluid into him. THey also decided that the amicar that he is on (to help him clot) could be decreased, as this may cause nausea. So they cut the dose in half!!! I am not quite sure how I feel about this yet, as I feel like if they cut that medication in half he is at a higher risk to bleed. But on the other hand I don't want him vomiting either, but they can always correct vomiting with nausea medicine and IV fluids, but bleeding would be more complicated....
Praying!!!

Surgery Day 3

2011-01-05T07:03:00.000-08:00

Can you say LOTS of medicine every 4-6hrs around the clock?!?!? Poor kid has never had problems taking medicine but now is another story

Sammy is doing pretty terrible today. He started vomiting last night and they did end up restarting his IV fluids. He vomited each time he took his medications. They ended up switching some to IV instead of oral. He has slept a good portion of today.
He has a sore on his mouth (I was told it was probably a burn from the instument they used during the surgery) that is really starting to bother him today. We are constantly making him stop touching and picking at it. They prescribed an antibiotic ointment so hopefully it will get better quickly.
There had been some discussion about a possible discharge today if he drank and did well with his oral intake, but now that the vomiting is occuring it might even rule out tomorrow too.
The good thing is that he hasn't had any bleeding. The medication to help him clot has been working well and I am so thankful. Praying for a good night tonight and an even better day tomorrow! Thanks for your prayers

Surgery Day 2

2011-01-04T09:48:00.000-08:00

We transferred out to a regular floor today. Sam is still being constanly monitored as far as vital signs and oxygen saturation. He currently has no IV fluids running but there is some discussion whether these will be re-started due to his poor drinking/eating today. He has peed a tiny amount since before surgery yesterday.
He seemed to be much more uncomfortable this morning than he was yesterday. It was pretty tough getting him to take any of his medications. He actually even spit some of them out. We have been trying to get him to drink all day but he just isn't having any of it right now. Praying that he starts to drink again.
We had some wonderful visitors today. Our favorite Child Life Specialist came this morning prior to leaving ICU. He was sleeping and didn't get to visit with her but I did. She was so sweet bringing him balloons, and a little kids laptop and a cute stuffed dog.
We also had a "music therapist" come see Sam today. She just came in and played her guitar and sang for Sam. He got to play the drum and cymbal during this time, and he did well although he was so so tired still

Success!!!

2011-01-04T09:36:00.000-08:00

Sam came through his surgery with flying colors! He did really well. They pre-medicated him with medications that would help him clot appropriately and these medications worked really well. He had no bleeding that was out of the ordinary!!! He was laughing as he went away from us due the medications they gave him:-) It was nice to not have to see his eyes roll back in his head and have him go limp in my arms, but I was anxious about not being there for him while he was awake.
The doctor was very surprised to find that Sam's tonsil was "green and mushy." which apparently he hasn't seen ever before! Yes again, Sam has done something another doctor at Children's Hospital hasn't seen!:-) But at least that green mushy tonsil is no longer inside of him. The doctor said that they were much bigger than they expected and they looked like they were chronically infected. So prayerfully this will improve his frequent respiratory illnesses and the apnea.
We were supposed to spend the night in ICU, and had a wonderful nurse. Sam was pretty much out of it for the whole night. He denied pain for the most part. And was loving eating orange and jolly rancher popsicles
Thank you all for your prayers for our little miracle boy!!!

Tomorrow...

2011-01-02T18:51:00.000-08:00

Tomorrow is the day
The day of the surgery
The day I have been praying for
The day I have been terrified about
The day I have been dreading

Tomorrow is
The day that God's will will prevail
The day that Satan's fight for Sam's health will be defeated
The day that I will rejoice for God's healing
The day Sammy will be able to breathe
The day I will be able to focus on God
The day we will be surrounded by love and prayers
The day that God will reveal Himself in a bigger way
The day that the Lord has made

The surgery is tomorrow afternoon. We will go in early so that he can get IV medication to help his blood function better to help prevent bleeding. I am so blessed to have the prayers of so many surrounding us, and also to have a support system of people coming into Boston, taking care of Sophia, and praying. Thank you to all of you! We couldn't get through this without all of you!!!

On New Years Eve we got to have Darius over to watch. Sam absolutely loves him! He wanted to hold him constantly. Sophia on the other hand, was jealous and didn't want me to hold him at all.

Phillipians 4:6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

2010 in review at OneTrueMedia.com

2011-01-01T21:24:00.001-08:00

Make photo slide shows at www.OneTrueMedia.com

The Battle belongs....

2011-01-01T20:43:00.000-08:00

To the Lord!!!
But for some reason I can't wrap my head around that for the last couple of nights. I feel as though I had a true panic attack last night. AS I watched Sammy sleep, the "what if's" started running through my head and it was devastating. I am just coming to a place right now being completely overwhelmed, exhausted, scared and terrified all at once. I have nothing positive to say tonight. I am scared, unbelievably incrediably scared. Yes I KNOW without a doubt that God is in control all the time, and that His plan is perfect, but what I don't KNOW is what that plan is, what steps are going to occur to have that plan come to fruition, and whether that plan leaves Sammy with no complications from this. The fear that is gripping me is almost unbearable. I feel like I am in this deep dark hole screaming for help and there isn't anyone close by.
My baby is going to be having surgery and it is extremely risky and I am just scared tonight. Please pray, pray that he will be ok, that there won't be complications, and that I can be strong again, because right now, I just want to curl up in a ball and hide. I can't stop the "what if's?" in my head, and I can't stop crying. I can't stop hurting and I just need Godly strength to get me through and I don't have it tonight.

Surgery

2010-12-30T21:25:00.000-08:00

We had our meeting at the pre-op clinic. They are going ahead with the surgery on monday. They were quite thorough with Sam's medical history, and seemed a little overwhelmed with some of the oddities of Sam at times. They have quite the significant bleeding plan in place. I felt much better about it after I knew what their plans were as far as the bleeding goes. We will actually go in early at which time he will get medications that will cause his blood to clot normally. This medication will be given IV, and then will continue to be giving every six hours for 2 weeks I believe. So we will be having to wake him once he is out of the hospital to give him this medication. But if it prevents bleeding then who cares right?
So we will head in on monday and just be praying fervently that all goes smoothly that there is no hemorrhaging, that the pain is well controlled and that he recuperates faster than anyone expected.

Last night....

2010-12-29T05:02:00.000-08:00

-We had NO APNEA!!!
-No
-fever
-Some coughing, but much much better

So thankful for a restful night for all of us:-) I have a follow up appointment with the workman's comp doctor today, so I am praying that goes well!

Have a blessed day!!!

Pre-eclampsia:-(

2010-12-28T17:17:00.000-08:00

I heard over the weekend about a sweet girl that is 19 years old and pregnant with her first sweet baby girl. She was diagnosed this weekend with pre-eclampsia and is 29wks pregnant. As of today she is still pregnant, and her blood pressures are a bit better than they had been. In speaking with several people that know her or are family members, I am again so annoyed that everyone is so clueless about this horrible disease. I just don't understand! People DIE from this and they die often! The risks are great, and so many times people have absolutely no idea what the warning signs are, or the risks involved. Please lift Kayley and her sweet baby girl in your prayers.
Another friend had her daughter the friday before Christmas. She had Pre-eclampsia with her second pregnancy AFTER she delivered (a week after)!!! and ended up in the ICU after she had the baby and was separated from the baby for several days. Her third pregnancy, she was delivered a week early becuase her pressures were creeping up. She delivered on friday and on monday her blood pressures started getting HIGHER. The covering doctor was notified and reminded of her history. And he did NOTHING!!! HEr pressures were 200s over 100s by the night time and again the the covering MD did NOTHING!!! My friend thankfully paged her own doctor at home at 1am letting her know what was going on. More blood pressure meds were ordered, and then she ended up being admitted to the ICU again!
I just don't get it! I don't understand why such a horrifying disease is so unimportant and not treated pro-actively? Why? Why?
I am so thankful that my doctor is pro-active. I am thankful that she followed me so closely with Sophia and kept both of us safe. I am thankful that she is referring me to a high risk OB this year. NOT that I am pregnant!!! I am not but I want to know if there is anything that I can do to prevent this from happening again.
Totally different post than anything lately, but hearing people struggle with this brings back so many unpleasant memories, but also beautiful memories of my very much alive children, and the heartbreak of knowing that other peoples children have not survived:-( Know that I am praying for you tonight!

Antibiotics, IVIG and special friends

2010-12-28T15:59:00.000-08:00

Sam was so so happy to see his friend Khadeisha. They had so much fun playing with the I-Pad:-)

So I met with Sam's doctor first thing this morning before driving into the city for the IVIG. She said he had very purulent drainage:-( So we have started our third course of antibiotics for this crazy sinus infection that we just can't seem to get past. It is crazy, last winter he essentially had one continuous sinus infection, which is what led them into wanting to remove his tonsils. We then started having all the apneic episodes, and that is what has convinced them to take out the tonsils. But the ORIGIONAL problem is what may prevent us from doing this! Uggghh. A wonderful friend said to me today that this might be God's way of telling us that right now isn't the right time to do this, so I am waiting on His guidance.
We went into Children's today to have his IVIG. They now have a beautiful new unit. We had a nurse that we weren't familiar with but she was wonderful. And of course our favorite child life specialist Khadeisha was there. Sam just loves her. She is going to come visit him when he is in the ICU next week. We are so thankful for her. I am not sure who the actual donor was, but many many Apple I-Pads were donated to Children's Hospital! Sam absolutely loved playing with it. I must admit I was pretty enamored with it myself:-) He played with one almost the entire time we were there.

Psalms 27:14 Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.

Sammy is sick:-(

2010-12-27T18:17:00.000-08:00

Sammy seems to be getting sicker. He had such a bad coughing spell this evening (about two hours after albuterol) that he actually vomited and was choking. The poor little guy was struggling to breathe. I am meeting his doctor first thing in the morning, but am praying that nothing happens during the night that causes us to need to go to the ER.
They may postpone the surgery! Would you please join me in prayer that they will continue with the surgery? That Sam will quickly get healthy and that they can proceed as planned? It has been very stressful getting all the plans in place as far as a place for Sam and I to stay after he is discharged from the hospital but still needs to be cloes by, and childcare for Sophia, and working my doctors appointments into the mix. I am just wanting this whole process to be completely behind us. Not to mention that the tonsils are probably what is causing all of the sinus infections and respiratory symptoms. So we are really probably going to be sick until they are out.
So I am just praying that they can come out next week, and then we can start the recovery process....AND trasition AWAY from the apnea monitor!!!:-)

Psalm 91:14-16
14. God says, I will save those who love me and I will protect those who acknowledge me as Lord.
15. When they call to me, I will answer them; when they are in trouble, I will be with them, I will rescue them and honor them.
16. I will reward them with long life; and I will save them.

One week!

2010-12-27T04:48:00.000-08:00

Officially the count down has begun. One week from today is his surgery. And although I am trying to remain positive and unafraid the things that are running through my mind are sad/hard things...
First the hardest part of surgery for me is when they allow me to go into the OR with him and they allow me to hold him as they put him under general anesthesia. There is something that is just horrifying to watch as your child's eyes roll back in their head and they get limp in your arms.:-( HARD!!! But I truly wouldn't have it any other way, regardless of how hard it is for me, I would never want him to go through that alone.
Second, the whole ICU part of this admission. We haven't been in the ICU with him before (praise God!!!) so I am wondering how he will do. The ICU is such a different atmosphere of any other area. I am praying that it isn't too traumatizing for him. And also that some of our friends/nurses/clowns/child life specialist are able to come see him to help him be more at home while we are there.
Third, the pain! Poor little guy! He has had a cough that has worsened over the weekend and now is complaining of a sore throat. Because of that he hasn't really been eating at all this weekend. I can't imagine how hard it is going to be after the surgery for him. He has already lost almost two pounds since thanksgiving.
And of course there is the whole bleeding disorder part of things. Apparently they will be pre-medicating him prior to surgery with the medication they used prior to the last scope that they did. And he didn't bleed after that so I am praying that the medication has the same affect. I know that there had been some discussion as to whether they would actually transfuse some platelets prior to the procedure. I am not sure if that is the plan or not.
We have been in the hospital so much with this little miracle boy of ours. And he always has the best attitude and a smile on his face. My prayer is that this will continue. The posted picture is one of my favorite pictures of him, it has his personality written all over it. He had just woken from anesthesia and was so happy. He is SUCH an amazing blessing to us, God has given us this amazing gift, and He has given him this wonderful amazing personality. I can't wait to see where God takes him in this journey.

Christmas

2010-12-26T10:18:00.002-08:00

Christmas morning was spent here at our house. Matt, the kids and I had a nice morning together as a family. They each got something that they each were really excited about: Sam got a remote control tank (I think Daddy was excited about this too:-)) and the other thing he was really interested in was the Operation Game (he had played it the last time he was in the hospital) and Sophia got a lot of dress up clothes and a "Bitty Baby" which is a sweet baby doll made by the American Girl dolls. She seems to really love her baby, whom she has named Baby Jess/Jessie.

Sophia also got a tutu, which she put on immediately before opening anything else

Princess Sophia

Sam and Daddy with the new tank

My parents came over to spend some time with the kids. My mom has talked about how when we were all young how her parents always came to see us so we could be at home with our new stuff. I think that I am starting to feel as though I don't want to drag the kids all over the place trying to see everyone, so I think that I will request this in the future. That people are more than welcome to come to our house. If you have both sides of the family close how do you divide up the holidays?

After spending the morning at home, we went to Matt's parents in the afternoon for Christmas Dinner. By early afternoon Sammy had gotten a fever and had frequent coughing. I gave him albuterol which seemed to help the cough. We went over and had a delicious dinner. Shortly after dinner Sam started complaining that he was sick and had some diarrhea. His fever then got higher and he fell asleep. He slept for quite a while. Once he woke up he perked up and seemed to be feeling better.

Sophia taking Baby Jessie with her. She wanted to bring Jessie's high chair too:-)

Grandpa and Sammy cuddling on the couch

Cousins Naomi and Andrew

Sophia and Chris

Sophia and Andrew

Sammy, Daddy and "Baby Jessie" taking a nap

Christmas Eve

2010-12-26T09:56:00.000-08:00

Christmas Eve this year was a busy wonderful day. Unfortunately Matt had to work so he was unable to join in the day with us. We started the day by going to my mom's, where four of my five siblings and spouses were. Unfortunately my brother DJ and his wife Lyndsea were in florida so they couldn't join us. We had a great time at mom's playing with friends and family.

Sammy with Dennis and Johanna's snake "Moses"

My beautiful new nephew Darius Jeremiah

Sam and his friend Kaedan

Sophia and Sydney

We left my parents house and then went to a church that we had not attended before. Our friend Joan was actually singing several songs and invited us to see her. The kids did really well. They got loud occasionally but they did a really good job. I was so thankful to attend.
After that we went to Matt's grandmothers house. It was super busy there this year. The kids had a blast playing with their cousins, Allayna, Jacob and Ava. "Nana" read the Christmas story to the kids, and then asked them questions about His birth. It was really cool to watch. We then sang several songs, and Sophia was thrilled with the singing.
It was close to 10 when we got home. The kids went to bed and then the Christmas morning preparations began...

Luke 2:10-11
10And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people.

11For unto you is born this day in the city of David a Saviour, which is Christ the Lord.

Joy to the world, Chris Tomlin. joy, unspeakable joy! with lyrics

2010-12-25T07:48:00.000-08:00

Merry Christmas EVE!!!

2010-12-24T06:10:00.000-08:00

Sammy would appear to be getting very sick respiratory wise. Please pray for him! He is coughing so much that he is having trouble catching his breath. Doctor is calling in albuterol but it isn't ready yet:-(
Yesterday was a TERRIBLE day! I had to go into my job at which point they told me that they were giving my job to someone else! I cried! I was so upset. Here I was being told what a wonderful employee I was, and they were telling me that they were sorry but they couldn't wait for my back injury to fully heal (an injury that occured at work) and therefore they would allow me to work in employee health for a little while, until I could go back to regular duties, but if at that point they didn't have any jobs then I would lose my job:-(
I was so so sad and overwhelmed. I started making some phone calls, and everyone was saying that they could do this. That there was a statute of limitations. I was trying so hard not to panick. But it was so overwhelming. I couldn't apply for a new job with my back injury. No one would want to hire me:-(
But as always God interviened!!! I still am smiling about how this all came to play out. After talking with my union rep, the head of the union, and the union lawyer and having them each tell me that the hospital could do this I was so upset. But the lawyer said that he was going to call the VP of the hospital and talk with him about the offer that they were giving me. In that time frame the lawyer remember something about a previous case that he had assisted with and dug deep into the contract and found something that said that they could NOT DO THIS!!!! They have to keep my position for me until I am ready to go back, whether it is tomorrow or a long time from now! I am so thankful that I decided to pursue this, that God put a check in my spirit to look further because if He didn't I would probably be out of job next month! Praise God for ALWAYS ALWAYS being there!!!
Today we will be celebrating the impending birth of Our Saviour! I am so grateful that I live in a family that celebrates this! We will be going to my mom's for Jesus's birthday party this afternoon, then to church this evening for a candlelight service and then to Matt's grandmothers. It will be a busy fun filled day! Praying that your day is wonderful!